Legal, ethical, and spiritual foundations of ACP

Katherine Irene Pettus PhD

I. The ethical framework of ACP

It is well accepted that practices of advance care planning (ACP) and shared

decision making1 are based on at least three inter-related ethical principles,

the first of which is respect for patient autonomy — the individual’s right to de-

cide what will be done to her own body. This entails the right to access infor-

mation about her condition, as well as all available treatments, and her in-

formed consent for any treatment.

Second, the principle of beneficence, which is based on acknowledgement of

our human vulnerability and embededness in community. Communities in-

clude family, healthcare providers, village, city, nation, region, and the world

as a whole. And third, justice, which for these purposes can be defined as

equitable distribution of resources, non-discrimination, and universal access

to basic healthcare.

Biomedical ethical principles, including autonomy, which entails respectful

conversations between providers and patients, have spiritual, physical, emo-

tional, social (economic) dimensions, and primarily implicate relationship.

Thus the principle of beneficence entails commitment to an ethic of conversa-

tion, unto and beyond death, between provider, patient, and family/care-

givers. Clinically defined, this conversation is the ongoing discussion of

“goals of care”. However, goals of care are not set in stone, and often have to

1 The United Nations have described “supported decision making” as follows: “The individual is the decision maker; the support person(s) explain(s) the issues, when necessary, and interpret(s) the signs and preferences of the individual. Even when an individual with a disabil-ity requires total support, the support person(s) should enable the individual to exercise his/her legal capacity to the greatest extent possible, according to the wishes of the individual... Para-graph 4 of article 12 calls for safeguards to be put in place to protect against abuse of these support mechanisms.”

be re-negotiated with the progression of the disease or with new complica-

tions. Discussing goals of care thus paradoxically is a commitment to

process, not ends. This conversation calls on the virtues of courage, honesty,

friendship, and wisdom. Classical philosophers considered development of

these virtues essential to good citizenship

II. Human rights and healthy communities

ACP implicates at least three universal human rights: to life, to the highest at-

tainable standard of health, and to be free from torture.2 Although there is no

“human right” to honest communication…progressive realisation of the rights

of seriously ill people of all ages, and terminally ill older people, to “health”

and freedom from torture, seems to depend on a commitment to open com-

munication by healthcare providers.

Yet in the human rights framework, states are responsible for ensuring that

their citizens’ human rights are fulfilled. Whether certain vulnerable popula-

tions can realise the right to health entails a state obligation to ensure that

ACP and EOL conversations are both offered, as appropriate, and take place

in a sensitive and effective manner.

The Universal Declaration of Human Rights, 1948, (UDHR) is a product of

commitment to the ethic of transnational crucial conversation: The UDHR was

drafted by representatives of particularly diverse, even opposed, ideologies.

“Today, the Declaration of 1948 can be considered as ‘‘the single most impor-

tant reference point for cross-national discussion of how to order our future

together.”3 Its touchstone, a wide- spread assumption that the ‘‘inherent dig-

nity ... of all members of the human family’’ is the ground of human rights and

2 UDHR and CESCR 3 Andorno, Roberto. Biomedicine and international human rights law: in search of a global con-sensus. Bull World Health Organ [online]. 2002, vol.80, n.12, pp. 959-963.

democracy,4 is one of the few common values in our world of philosophical

pluralism. This notion of human dignity is usually associated with supreme im-

portance, fundamental value, and inviolability of the human person. Dignity

means that people must always be treated as an end in themselves and

never only as a means.5

The ACP commitment to both autonomy and communication is apparently

paradoxical: it shows that treating a patient as an end in herself, while ac-

knowledging her embededness in community, are not mutually exclusive. The

paradox is nested in a normative framework whose premise is that individuals

achieve our best ends through narrative and communicative approaches.

The bioethical principles and human rights implicate at least three practical

questions about the obligations associated with rights: Should professionals

have official support and training to initiate ACP conversations?; Is there an

optimum time to hold these discussions? At a particular age? Or health event

(for example, hospital admission or new diagnosis)?; and finally, what are the

potential cost and resource implications of more end-of-life discussions?

Framing the ACP conversation as a “right” also implies that individuals have

the right to refuse the conversation, feeling that they lack sufficient informa-

tion to make a good decision. But does such a refusal implicate the rights of

others with whom they are embedded in community, and the ethical principle

of justice? The majority’s right to demand that resources be directed to better

primary healthcare in times of scarcity, for instance? If healthcare budgets are

a zero-sum game, and patients are consistently over-treated, because crucial

conversations have been avoided, the state spends scarce resources at a

cost to others. Communities need to discuss ways to answer these questions

4 United Nations. Universal declaration of human rights. Preamble. Available from: URL: http://www.un.org/Overview/rights.html 5 Kant I. Grundlegung zur Metaphysik der Sitten. [Foundations of the Metaphysics of Morals.] Berlin: Akademie-Ausgabe, 1911. In German.

and confront these issues if individual autonomy of vulnerable groups (such

as the frail elderly and terminally ill patients) is to be preserved. This is ACP

at a more macro-level.

As such, embedding the principle of autonomy in a wider context of conversa-

tion also implicates justice and vindicates the right to healthy communities: Al-

lan Kellehear calls for a participatory, community development approach to

death education that includes the employment of community development

workers by health care and government institutions and (even more impor-

tant) the deployment of unpaid community activists—such as those who

championed civil rights and other justice movements—who apply their orga-

nizing skills to build what he calls “compassionate cities”. Intentional commit-

ment to compassionate communities through development of ACP processes

outside the healthcare system raises the spiritual IQ of participants and builds

skills to take on other contemporary social, economic, and environmental

challenges.

III. International Legal and Human Rights Framework of ACP in Slovenia

Slovenia’s 2004 report to the Committee on Economic Social Cultural Rights stated that “Greater attention will be given to this group of people (the ter-minally ill) and their closest family members. We will elaborate pro-grammes of help for the families of persons dying.”6

Article 12 of the International Covenant on Economic, Social and Cul-tural Rights declares that, “The States Parties to the present Covenant rec-

ognize the right of everyone to the enjoyment of the highest attainable stan-

dard of physical and mental health.”

6 http://tbinternet.ohchr.org/_layouts/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID=9&DocTypeID=29. para. 745

General Comment 14 of the Committee of Economic, Social and Cultural Rights7 clarifies that the essential elements contained within the obligation to

the highest attainable standard of physical and mental health include;

• (2) Accessibility of services and facilities, including:

(IV) Information accessibility including the right to seek, receive and

impart information and ideas concerning health issues.

(3) Acceptability of services to be respectful of medical ethics

and of culture.

Like all human rights, the right to the highest attainable standard of health im-

poses three levels of obligations on State Parties: to respect, protect and ful-

fil. The obligation to fulfil contains obligations to facilitate, provide and promote, and requires States to adopt appropriate measures to en-sure the full realisation of the right to health.8

The Charter of the Fundamental Rights of the European Union provides

no guidance on ACP, since it only gives patients the right to “preventive

healthcare” and medical “treatment”. However, the principle of free and in-

formed consent, given prior to any intervention on the person concerned, is

closely linked to the right to respect for private life enshrined in Article 8 of

the European Convention on Human Rights.

7 The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that ―States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services. However, these rights are seen as aspirational— to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a gov-ernment may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out ―core obligations in the provision of health care and placed the burden on governments to justify ―that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as a matter of priority, [these] obligations.8 CESCR General Comment 14, paragraph 33

The Council of Europe provides explicit text though, quoted below, that ref-

erencing the “quality of life of the dying,” and clarifies the right to information

and statements of intention. Recommendation 1418 (1999), Protection of the

human rights and dignity of the terminally ill and the dying, states that:

1. The vocation of the Council of Europe is to protect the dignity of all

human beings and the rights which stem therefrom […]

7. Fundamental rights deriving from the dignity of the terminally ill or

dying person are threatened today by a variety of factors: (lists)

9. The Assembly therefore recommends that the Committee of Minis-

ters encourage the member states of the Council of Europe to respect

and protect the dignity of terminally ill or dying persons in all respects:

xi. b. by protecting the terminally ill or dying person’s right to

self-determination, while taking the necessary measures:

iv. “to ensure that a currently incapacitated terminally ill or dy-

ing person’s advance directive or living will refusing specific

medical treatments is observed.”9

With regard to the bioethical principle of justice: Recommendation

Rec(2003)24 of the Committee of Ministers of the Council of Europe on the

organisation of palliative care, calls on governments to guarantee equitable

access to such care for anyone whose state of health requires it.

The explanatory memorandum of the recommendation also points out that

“doctors are not obliged to continue treatments that are patently futile and ex-

cessively burdensome to the patient”, and that the patient may refuse such

treatment.

Furthermore, the Convention for the Protection of Human Rights and Dig-nity of the Human Being with regard to the Application of Biology and 9 Text adopted by the Council of Europe Parliamentary Assembly on 25 June 1999 (24th Sitting) Recommendation 1418 (1999)1Protection of the human rights and dignity of the terminally ill and the dying(Extract from the Official Gazette of the Council of Europe – June 1999)

Medicine,Convention on Human Rights and Biomedicine (ETS No. 164),

adopted in 1996 and opened for signature in Oviedo (Spain) in 1997 (Oviedo

Convention), forms an ethical and legal frame of reference through which

member states endeavour to find common, coordinated responses to the

questions that arise in society, with the aim of ensuring the protection of hu-

man dignity.

Article 9 provides for the possibility of people expressing in advance their

wishes concerning the end of their lives, in the event that they are no longer

able to do so when the decision has to be taken, and the duty of doctors to

take account of these wishes when assessing the situation.10

The issue is of particular salience to the frail elderly, who have no overriding

diagnosis. They are estimated to account for around 40% of deaths

and are often associated with multiple comorbidities and a degree of cogni-

tive impairment. Prognostication in this group is very difficult. A recent study

found that the majority would appreciate the chance to discuss end-of-life

care, yet most do not have this opportunity. It could be argued that institu-

tional failure to offer ACP discussions in a sensitive way amounts not just to

infringement of our elders’ rights to information, informed consent to treat-

ment, and even to free speech, but to elder abuse.

IV. Negative perceptions of ACP: barriers

Most US federal states have implemented laws that enforce adherence to ad-

vance directives, but now, after years of experience, some bioethicists be-

lieve that living wills have failed entirely since less than 20% of Americans

have them, and only a fractional percentage are actually followed.11 Neverthe-

10 Article 9 – Previously expressed wishesThe previously expressed wishes relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes shall be taken into account.11 Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep 2004;34(2):30–42.

less, the British and German parliaments have passed legislation to

strengthen the binding nature of such documents.12 Results of studies now

pinpoint limitations of advance directives and new directions for practice.

Many of those surveyed in studies feared that advance directives could be

misused. More than half of the interviewees in all groups believed that pa-

tients could be pressurised into writing such a document, a form of elder

abuse. One quarter of the patients and one third of the other groups, includ-

ing the physicians, feared a dictatory use of directives, even if they are no

longer appropriate to the medical situation. The majority in the healthy groups

(healthy controls, nursing staff, and physicians) believed, often groundlessly,

that relatives could abuse advance directives to the disadvantage of patients.

The extent of mistrust in advance directives expressed by these results has

not so far been sufficiently emphasised in the bioethical literature. The study

authors see this as a barrier, hitherto too little recognised, to the spread of ad-

vance directive use.13

Notwithstanding their limitations, however, study authors see advanced direc-

tives as invaluable tools that should be encouraged, not as ends, but as a

means to further communication between patient, physician and family. Cre-

ating a living will and/or choosing a surrogate through a durable power of at-

torney should not be an isolated event broached during a time of acute crisis

but should be part of an ongoing discussion intrinsic to the doctor–patient —

family relationship.14

12 Dyer C. Bill clarifies gap in law over living wills. BMJ 2004;328:1516. Task force of the Ger-man Federal Ministry of Justice on patients’ autonomy at the end of life. Final Report. 10 June, 2004. http://www.bmj.bund.de 13 Sahm, S., R. Will, and G. Hommel. "Attitudes towards and barriers to writing advance direc-tives amongst cancer patients, healthy controls, and medical staff." Journal of medical ethics 31.8 (2005): 437-440; Perkins, Henry S. "Controlling death: the false promise of advance direc-tives." Annals of Internal Medicine 147.1 (2007): 51-57.14 Whetstine, Leslie M. "Advanced directives and treatment decisions in the intensive care unit." Critical Care 11.4 (2007): 150.

The stakes of establishing an effective Advance Care Planning Program are

high, and clearly depend on the cultural context and the norms of the popula-

tion in question. Fortunately, the both Slovenia and international community

can learn from experiments that have been carried out to date in various com-

munities and to place challenges on the table as topics of conversation for

participants and policy makers alike. While this may not appear as a “quick

fix” or direct solution for the linked problems of low rates of completion

of Advance Directives and over treatment of vulnerable patients in the system

as a whole, it does begin the conversation.

Both within and beyond Slovenia, at the level of the international community,

the high stakes of not implementing programs that undertake to begin the

conversation about Advance Care Planning as an ethical imperative are:

1) health care institutions will continue to inflict unintentional and pre-

ventable suffering on patients and families;

• states’ default policy will be to tolerate breaches of the right to the

highest attainable standard of health regarding access to pain

medicine and appropriate care at the end of life;

2) some politicians will present euthanasia as a rational option for states

in economic crisis, convincing voters that the state cannot afford palliative

care or access internationally controlled pain medicines because of the

high barriers under the international drug control treaties.

States can avert these outcomes by implementing WHA Resolution A67/31,

which recommends integrating palliative care into the public health system.15

IV. ACP’s potential to build healthy communities. Although ACP cannot di-

rectly prevent these outcomes, ACP programmes can initiate a democratic,

participatory, conversation about the goals of patient care at the micro (pa-

15 http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_31-en.pdf accessed 12/8/2014

tient and family) level. Such dialogue might ultimately bear fruit at the macro

(community and state policy) level. There is a unique chance that Slovenia

can be a leader in such a societal development, piloting model ACP programs

for other EU countries and for the broader international community.

These conversations about mainstreaming ACP programs can take place in

the healthcare sector, at the level of civil society, as well as at the highest lev-

els of government. They can be held with organisations that defend the rights

of older people, as well as with Slovenian representatives at the UN treaty

bodies such as the Commission on Narcotic Drugs and the Human Rights

Council.

The new Independent Expert on the Rights of Older People, Dr. Rosa Korn-

field Matte, needs to hear from Member States that ACP programmes are a

public health priority. She can then choose to include this issue in her the-

matic and country reports to the UN Human Rights Council in Geneva.

Conclusion: Slovenia can draw on a solid international and European human

rights framework to begin the conversation about developing ACP polices and

practices. The strong claim of this paper is that building ACP practices into

national healthcare policy will, over time, increase democratic solidarity and

respect within civil society. Training healthcare professionals and community

volunteers to initiate and conduct discussions with vulnerable elderly and ter-

minally ill patients about their needs and priorities for their final days, weeks,

or months of life, will contribute to the overall emotional intelligence of society,

thereby increasing citizens’ contribution to the building of compassionate

communities.